EUReMS Dissemination Event at ACTRIMS-ECTRIMS 2014: Preliminary Results of Studies

The four studies produced by the teams of scientists involved in the EUReMS project over the past four to five years were presented, in preliminary form, at the Dissemination Event organised by EMSP as part of the ACTRIMS-ECTRIMS 2014 agenda.

Find a list of EUReMS deliverables here

These studies merged data collected from MS registries across Europe, in a pioneering initiative coordinated by EMSP. The data refers to tens of thousands of patients from countries such as Germany, Sweden, Italy, Poland or Serbia. There is a general agreement among the scientists involved that the challenging data pooling and analysis process was successful.  

Prof. Maura Pugliatti gave a brief overview of the preliminary results of two of the studies - “Estimating Prevalence and Incidence of MS in Europe from EUReMS data collection”, or EPI-1-d, and “Comparison of the effect of the month of birth across Europe” , or EPI-1-s; Prof. Jan Hillert spoke about the study “Comparison of access and effectiveness of DMD treatment for people with MS across Europe”, or DMD-1; and Karoline Buckow outlined the study “Assessment of people with MS’ quality of life, the burden of disease and influence of employment from the patient’s perspective across European countries”, or PRO-1, coordinated by Prof. P. Flachenecker.

The EPI-1-d and PRO-1 were also exhibited on 11 and 12 September during the poster presentation sessions.

For the EPI-1-d study, data was collected from 12 national MS registries - gathered from 17,000 patients over a total population of 18 million. The upcoming results are likely to ensure the ‘best estimate’ of MS burden in Europe available to date.

For the EPI-1-s study, again, 12 data providers participated. “We were able to find peaks in the month of birth of MS patients. April-May seem to be the peak”, read Dr. Pugliatti from the preliminary results. The experience of this study shows that data integration of many registers with different data architectures can be mastered.

For the DMD-1 study, three national registers participated – from Germany, Italy and Sweden – and were able to provide data referring to a total of almost 25,000 relevant cases, more than half related to German patients. Taking into account the onset and diagnosis of MS, the study gathered coupled data on 20,000 years ON opposed to 16,000 years OFF disease-modifying treatments (DMDs). “People on DMDs appear to be doing a bit better then those who were never treated. The difference is small”, conveyed Prof. Hillert.

For the PRO-1 study, data on quality of life from 4,500 patients was provided by three MS registries - from Germany, Poland and Sweden - with most of the data coming from the Scandinavian country and very recent data, from 2013-2014, being provided by the other two registries. One ‘very preliminary’ result shows that MS patients who are unemployed tend to have a worse quality of life.

Overall, Prof. Jan Hillert used words such as “very satisfied”, “relieved” and even “surprised” to describe the outcome of the first phase of EUReMS. His colleagues agree with that an ensuing phase is needed to process all the data and provide final conclusions, while also attracting new registries to join the already established cross-border platform for data collection, analyses and dissemination.